For anyone who is affected by a Periodic Fever syndrome, looking to find a diagnosis, undergoing treatment or in need of information.
To date there has been no national support group for those suffering from Periodic Fever Syndromes. It is hoped that this site can be a means for you to share and link to useful information. It is likely that you have already found that much of the scarce available information about these syndromes is, at present, mostly in the form of complicated articles in medical journals, there is little available for patients about the day-to-day practicalities of living with the syndromes, for both sufferers and their families. There are also still many medical questions where full research has yet to be carried out, leaving many of us unsure about the exact nature and progression of the syndromes and effectiveness of current treatment options. The site is open to everyone to have input, share experiences and information and as a way of raising publicity about the conditions. The definitions and summaries of the Periodic Fever syndomes are found by clicking the link below
NEWS
May 2011 - A first national PFS-UK meeting? See BLOG to have your say...Also more of your own case stories, keep e-mailing them in...!!!
Feb 2011 This site was launched on Rare Disease Day 2011
Please bear with us as the site develops and more information is added. Further feedback is welcome via the "Contact" page. The site is in it's infancy and the "practical advice" pages are still under construction, so your tips and advice to add to these pages will be much appreciated by fellow sufferers!
Acknowledgements - Thanks to many doctors and nurses who have, over the years, been willing to query,"just another virus" and looked outside the norm, epecially "Nurse Cheryl" (who was there for us during some of the worst times in hospital). Thanks also to those who have lived with a Periodic Fever Syndrome for years already and participated in past medical research for the benefit of others like us.
This website is dedicated to all those who suffer with a Periodic Fever Syndrome.
Web creator: Michelle Goodhall
Web contact: michelle_goodhall@yahoo.com
Site Launched: 28 February 2011
Page updated: 26th May 2011
Disclaimer - Although great care has been taken in the compilation and preparation of this website to ensure accuracy, Periodic Fever Syndromes - UK Support cannot accept responsibility for any errors or omissions. The creator is not medically qualified or trained and information supplied by external parties to the site is offered only on the basis of a patient or parent sharing their own experience. The information does not replace the doctor-patient relationship and you should obtain further information from your medical practitioner. Any links to external websites have been carefully selected but are provided without any endorsement of the content of those sites. The website and creator do not receive any external funding. The confidentiality of a visitor's personal data submitted to this site is respected . Patient stories or comments are only shown where full permission has been granted